I'm writing this in the hope it gives readers some more information
about
Campath-1h

Before reading this, please bear in mind the following:

This diary is not a substitute for good medical advice.

If a medical practitioner contradicts anything written here, it is highly
likely that they have access to more up to date information than me.

This is my experience of Campath, it may not be yours. Please bear in mind
that yours could be better, or it could be worse.

Whilst I have received the equivalent of 'high-dose' Campath, my treatment
was not conducted in accordance with the CAMMS223 trial protocol (see Background
below). Those considering inclusion in that trial should find out from
their local trial organisers what else is required.

You will read in fairly graphic detail the ups and downs of the last few
months, but please understand that, on balance, I believe this treatment
has made a significant and positive difference to me and my MS.

Background

I am a 37 year old man, living in the UK. I was diagnosed with probable
relapsing remitting MS in October 2001 after a fairly major relapse in
July of that year. I had suffered some sensory disturbances a year or two
earlier, but had ignored them thinking they were the result of a sporting
injury. It was impossible to ignore the July attack. I went numb from my
feet to the middle of my chest.

Fortunately by February 2002 I had recovered fully from that relapse,
and naively thought things would be okay for a while. I was wrong. During
2002 I had at least four relapses, possibly five, and my diagnosis became
one of clinically definite MS. I lost track over the year as what was relapse
and what remission. During relapses I had to use a walking cane, and suffered
various sensory problems in my hands and legs. My ankles and legs became
very weak and stiff. I struggled to walk up stairs, feeling as if I had
lead weights attached to my ankles. Whilst I recovered my ability to walk
after each relapse, my stamina dwindled considerably. I tired more easily
and found exercise and my aikido training more exhausting.

I was considered for Campath-1h in August 2002. I was accepted for the
CAMMS223 trial of Campath-1h versus beta interferon, but changes to the
trial protocol and the unclear date of my first symptoms meant I had to
be excluded. The organisers had originally considered me for Campath-1h
for two reasons:

My rate of relapse didn't bode well for the future. It showed that the
disease was very active and that lasting damage would result.

My recovery from the relapses was still good. I hadn't suffered any overt
damage other than a decline in my stamina. If the disease could therefore
be halted at this point, I stood a good chance of staying able-bodied.
The theory behind the Campath-1h trials is that if it is given early enough
it may stop progression of disability. It kills the T Cells (the ones that
attack myelin), and they take a while to recover. When they recover it
is hoped that they are 're-educated' to be myelin friendly. It's almost
like re-booting your immune system.

While I could not be included in the CAMMS223 trial, the organisers felt
that they had promised me a treatment and therefore could not now ignore
me. It would have been easy for them merely to exclude me and suggest I
opt for beta-interferon treatment. Instead, they offered me Campath-1h
on a compassionate basis, for which I cannot thank them enough. With hindsight
it was a blessing in disguise. I was being offered the potentially more
powerful drug, did not risk being randomly chosen to take Rebif (the beta-interferon
drug chosen to compare with Campath-1h), and did not have to endure the
ghastly pre-treatment MRIs. The sole, and rather minor, downside to this
was that my treatment was administered on an NHS ward rather than in a
swanky new clinical trial centre.

I accepted the offer of treatment for the following reasons:

I believed my mobility would be seriously and rapidly affected if I did
not accept treatment. I looked at the suggested side-effects and weighed
them against that prospect.

I looked at what was most important for me and my quality of life. I then
asked myself whether Campath would safeguard those things, or whether it
would risk them further. I concluded that, on balance, it would help.

I considered the side-effects of not using Campath-1h, using the ABCRs
instead or simply doing nothing. I concluded that Campath might look initially
frightening, but it is far less so when compared to other treatments or
non-treatments. For instance, Campath treatment was something that lasted
for a few days, while the ABCRs required daily injections for years or
even decades.

MS can be a devastating disease that takes many years to show its true
self. It is easy to forget about the disease, or even deny its existence,
when you are in remission. You often feel so well. Even immediately after
a relapse, it is easy to believe that MS is a passing ailment. When considering
Campath it may be worthwhile asking others to remind you how you felt and
behaved during previous relapses. This may focus your mind on whether or
not to accept treatment, as it did for me.

The Campath Treatment 2nd February 2003

Day 1 - Sunday

I arrived at Addenbrooke's in Cambridge. I was admitted to the neurology
ward the evening before treatment. This was not because any particular
tests had to be conducted, or food/water denied me, but simply to secure
a bed for the forthcoming treatment. I won't bore you with my personal
views on the efficiency or otherwise of the UK health service. Suffice
to say, my initial impressions of the ward I was destined to stay on were
fairly grim. Those views didn't change much over the course of the week.
Those of you who have spent time in an NHS hospital may know what I mean.
Entering hospital when you are feeling perfectly well, only to spend time
there and receive a treatment which may (initially) make you unwell, is
a strange experience. It made me feel like a bit of a fraud. It also made
me hope I didn't last to a sufficiently old age to endure some of the indignities
suffered by the older patients with distressing neurological conditions.
It also made me envious of those on the official trial who would avoid
this.

Day 2 - Monday

Treatment started first thing in the morning, which I found exhausting,
as I'd slept only a few hours during the night. I had blood taken to check
for base levels of lymphocytes and other bloody chemistry. I had a cannula
inserted in my arm, which was to stay there for the rest of the week. Fortunately
it didn't fail or block and need replacing. I don't like needles at the
best of times, have never had an IV drip before, and didn't particularly
like having the device embedded in me all the time.

My first hour of treatment consisted of steroids. I was given methylprednisolone
1g for each of the first three days before Campath-1h treatment. I experienced
few side effects from the steroids, which surprised me as I'd never had
them before. I did suffer the unpleasant metallic taste, a feeling of restlessness
(tired but with a mind that couldn't rest) and a light-headedness, which
affected my balance.

Before the Campath infusion started, I was given two doses of antihistamine
(Piriton and Zirtek) and some paracetamol. The antihistamine was to act
as a prophylactic to reduce the effects of the 'Campath Rash' (more of
that later), while the paracetamol was designed to keep my temperature
under control. Campath seems to make body temperature rise, and this can
exacerbate other symptoms (rash, MS symptoms, headaches etc). The other
prophylactic was the consumption of large quantities of water. I drank
about 3 litres of water during the infusion each day. I was told this would
also help maintain my blood pressure and heart rate, both of which Campath
can reduce significantly, and both of which were checked every 30 minutes
during the infusion.

The infusion lasted for 4 hours, and consisted of 20mg of Campath 1-H.
This was the dose given for each of the 5 days. The time taken to give
the infusion was reduced each day as my body grew accustomed to the treatment.

My most significant symptoms of the day were a persistent mild headache
and a general overwhelming feeling of weakness. I didn't suffer the rigors,
sweats or other flu like symptoms that Campath can sometimes induce. The
headache was helped by the water consumption, the paracetamol and a stronger
painkiller. The only downside to the latter was a slight feeling of nausea
and more light-headedness.

I didn't suffer a recurrence of many MS symptoms other than a slight
weakening of my legs and some tingling in my hands and legs. The weak legs
were difficult to distinguish from the general weakness I was feeling,
but I did need a walking stick to help with my balance. It also helped
to propel me to the loo/washroom as the water I'd been drinking took its
effect. Campath can sometimes induce the type of MS symptoms that occur
when PwMS take a very hot bath. It isn't believed to be a relapse, but
can be distressing nevertheless.

I was given a sleeping tablet to combat the restless feelings that the
steroids induced. It also blotted out the general mayhem on the ward and
allowed me to sleep for more than a few hours.

Day 3 - Tuesday

I was given the IV steroids, Campath-1h, antihistamines, paracetamol
and litres of water over 4.5 hours today. I experienced many of the same
side-effects as on Monday:

metallic taste in mouth

light-headedness

restlessness

mild persistent headache

temperature fluctuations

sore throat (new today)

dry mouth (due to the build up of antihistamines I believe)

overwhelming feeling of weakness

some mild MS symptoms

Once again I relied on a sleeping tablet (zopiclone) to help me rest.

Day 4 - Wednesday

Another day of steroids, Campath-1h, antihistamines, paracetamol and
water. This time the infusion lasted 4 hours. The side-effects were the
same, but I started to develop the Campath rash late in the day. It began
with a few small pimples like nettle rash on my shoulders and upper chest.
I thought nothing of this, and kept taking the antihistamines. I don't
particularly like taking them, as they tend to make me feel woozy, de-hydrated
and generally unpleasant. I also suffered a minor asthma attack in the
late afternoon. I had been warned that Campath can induce this type of
reaction, usually after the infusion. I suffer from mild asthma, and am
used to the chest tightening sensation, but it can't be pleasant for those
that do not realise what is happening. I used my salbutamol inhaler and
the attack passed.

My progress had been so good up to that point, and my side-effects so
controllable, that I was asked whether I would like to be discharged overnight.
I only live a few miles from the hospital, had someone to drive me back
and forth, and someone to look after me. I jumped/limped at the chance
and went home. I did wonder later whether this had been the right choice
when my asthma returned with a vengeance. It took a number of uses of my
inhaler to control the attack, and it did frighten me. I wouldn't have
taken much more for me to have returned to the hospital, in spite of the
grimness of the ward. Still, I survived and stayed at home until the following
morning.

Day 5 - Thursday

No steroids were administered today, so the infusion only lasted 3 hours,
with no new symptoms and a reduction in most previous symptoms. Again I
was given antihistamines and paracetamol. I was extremely grateful for
the former. The rash had been spreading down my body during the night and
early morning. As the rash moved, it changed from small pimples to large
red blotches, and finally looked much like a red coastline. My neuro cheerfully
informed me that this was a 'geographical rash'. The fourth dose of Campath
didn't help the rash at all. I looked like I had severe sunburn and the
rash became intolerably uncomfortable. It spread to my arms and eventually
to my legs during the course of the day. It was all I could do to stop
myself clawing my skin from my body or holding a nurse hostage until I
was brought more antihistamines. I felt like an antihistamine junkie, waiting
desperately for my next fix of Piriton.

I was discharged again in the evening, and was given a dose of Ventolin
via a nebuliser to open my airways and try to prevent another asthma attack.
It seemed to work, as I only felt slightly asthmatic during the evening.
I took Piriton every 4 hours, and was desperate for each dose.

Day 6 - Friday

A short dose of Campath-1h over 2 hours, with few symptoms other than
the general feeling of weakness and a body temperature that felt as if
it kept on fluctuating. The core temperature readings taken every hour
or so suggested otherwise, but I felt constantly hot or cold, never just
right. The rash started to abate. I had feared that another dose of Campath-1h
would trigger a re-occurrence, but it didn't. The rash was finally hitting
the lowest points on my body, and I could see an end to it and the ghastly
antihistamines. I was discharged from hospital almost as soon as the treatment
had finished. I was given another dose of Ventolin via nebuliser to open
my airways.

I was sent home with antihistamines and sleeping tablets. I was also
handed a copy of my discharge letter, which showed my blood chemistry with
zero lymphocytes. I was advised to keep a copy of it to hand in case I
was admitted to hospital again for any reason over the next few weeks.
Any doctor treating me and taking a routine blood sample would be astonished
by what they found, if they didn't know what I had just done. I was advised
to avoid ill or infectious people for at least the next 8 weeks, advise
the hospital of any suspected infections, but otherwise to continue with
my normal every day activities. I was also told that I would probably be
too weak to do much other than rest for the first week or two. I was asked
to have a blood test each Monday for the next 4 weeks to check whether
I was developing antibodies to the Campath-1h (something that would stop
me having another dose) and to return for a check up in a month's time.

Week 1 after treatment

For the first few days after discharge I felt awful. I felt completely
exhausted. I was relieved that the treatment was over, but more tired than
I had ever felt before. Fortunately I was able to sleep, and had my wife
and kids to look after me. By the end of the first week I felt significantly
better. I was still suffering from balance problems, weak legs, temperature
fluctuations and irritable skin, but I felt stronger. The irritable skin
was an odd sensation. It was like permanent chilblains. No rash was visible,
but I couldn't stop scratching. This was helped by a low dose of antihistamines.

Week 2 after treatment

My skin still felt irritable, and my asthma was slightly worse than
normal. My temperature had settled down a bit and I didn't feel so tired.
In fact I felt completely the opposite. I didn't think I'd felt that well
in a long time. I had some residual MS symptoms consisting of tingling,
buzzing and slight leg stiffness, but nothing that couldn't be ignored.
I had huge amounts of energy, and I couldn't work out where it came from.
I wondered if it was something to do with the steroids, or merely a reduction
in MS fatigue as the disease went into remission.

Week 3 after treatment

I figured out where the energy boost came from - the steroids. As their
effects wore off, I started to tire more easily. This pleased my wife,
as she was starting to find my bouncy, perky, 'Duracell Bunny' impressions
wearing. I was not exhausted, just not quite so energetic/annoying. I suffered
a few more transient MS symptoms (tingling hands and twitches) but nothing
that could not be ignored.

Weeks 4 and 5 after treatment

I had my last weekly blood test. My energy levels were continuing to
decline, and more MS symptoms (twitching, buzzing, tingling and leg weakness)
became apparent, although they were still fairly transient. Towards the
end of week four I was becoming very tired. Sleep didn't seem to help much
and the MS symptoms started to concern me. I thought the flag was about
to be raised on another relapse, but nothing happened and it appeared to
be a false alarm. By week five other non-MS symptoms started to intrude
(persistent headache, aching muscles, restless sleep, and sore throat)
. I couldn't keep myself away from the sickly world entirely, and I believed
that I had picked up some virus from somewhere. I was less than thrilled
as my eldest daughter succumbed to a minor stomach bug. At the end of week
five the jury was still out on whether it would develop further.

First Check Up - 1 month - March 2003

I met my ever cheerful neuro at the end of week five. He put my mind
at rest about the transient MS symptoms, assuring me that Campathers can
suffer quite severe MS symptoms for up to two months after treatment. Some
even suffer full blown relapses. Yet more blood was taken, and he said
he would advise me if there was anything amiss, including whether there
was evidence of an underlying virus/infection. He also told me that the
% rate of Campathers who had developed Graves disease had fallen to 25%
from 30%, although this was based on a very small number of patients, and
a more accurate figure would be obtained as more were treated. I felt more
relaxed after the meeting, and looked forward to the next check-up in a
few months time.

Second Check Up - 3 months - May 2003

The previous couple of months were good, but not brilliant. On the MS
front things were excellent. I was very pleased with the effect Campath
had on my MS. I suffered only transient symptoms and only the hint of a
possible relapse. The latter felt as if it was 'under starters' orders'
but never developed into anything else. I was able to return to my aikido
training, and sustain decent periods of activity.

It wasn't the MS that caused me problems, but other tedious ailments.
The infection I thought I'd picked up prior to my last check up made itself
apparent afterwards. I suffered a nasty cold/cough. It took me a week and
a half to recover from the bulk of it, whilst I suffered a persistent cough
for another three weeks. My wife and kids seemed to suffer from the same
virus and recovered within 48 hours. Still, I recovered fully, and had
been warned of possible opportunistic infections. I had been paranoid about
stopping other people's children visiting the house, but I had caught the
virus from a trip to my aikido dojo. Still, it didn't stop me continuing
to be the unreasonable father.

Just as a I recovered from the cold my stomach started to complain.
I suffered stomach cramps whenever I ate certain foods. At first I thought
it was a standard stomach bug, but only certain things seemed to upset
me, and most of these contained gluten or milk/dairy. My GP performed various
blood tests (e.g. for helicobacter pylori) and prescribed me nasty pink
liquid to soothe my stomach. I simply avoided the foods that were upsetting
me, and things started to improve.

All tests were normal apart from an antigliadin antibody test, which
showed elevated levels of those particular antibodies. Those are antibodies
which suggest an intolerance to gluten. A much more sensitive and more
modern test performed at the same time (tissue transglutaminase-2) showed
quite the opposite i.e. no intolerance to gluten. I should point out here
that my mother suffers from gluten intolerance, so I have a genetic predisposition
to it anyway. With the contradictory results, and my family history, my
GP decided to refer me to a gastroenterologist for further prodding and
poking at the end of July.

I visited my neuro for the second check up. He listened to the various
complaints about my stomach and suggested he would also extend the usual
blood tests to include the antigliadin antibodies. He did suggest that
the steroids given with the Campath might have irritated my stomach lining,
even to the point of causing a stomach ulcer. This did ring true, as non-steroidal
anti-inflammatory drugs have previously upset my stomach, so steroids could
conceivably have caused even greater problems.

Third Checkup - 7 months - September 2003

As promised, my neuro analysed my blood from before and after Campath
and found some interesting results. Tests pre-Campath found that the antigliadin
antibodies were within a normal range. Tests taken in mid-May also showed
they were within a normal range, but tests from mid-March showed a large
spike in the level of the antibodies. This coincided with the onset of
the stomach pains. These pains and other symptoms declined as the weeks
passed, and varied according to the type and quantity of gluten-filled
products I consumed. I found it simpler to avoid bread and pasta altogether,
but took advantage of the fact that beer (contains barley) didn't affect
me. I continued to check how much gluten I could consume and found this
was increasing month by month. I was scheduled to have further gastrointestinal
investigations at the end of July. I chickened out. My symptoms were getting
better week by week, and I decided to give them another few months to correct
themselves. I didn't think it was unreasonable to avoid an invasive procedure
if I believed I was getting better.

I suffered some transient MS symptoms during these months. These were
always triggered by a lack of sleep, excess heat, travelling long distances
or stress. I had been feeling so well that I tended to overdo things. I
drove hundreds of miles without concern. I walked long distances in blazing
heat. I pursued my acquisitive daughters around endless tourist shops.
I even travelled to Edinburgh and Cardiff on consecutive weekends and did
hard aikido training for six hours a day on two days during each weekend
in 90 degree heat. After such bouts of lunacy I was forced to use my walking
cane for an hour or two, but that was a small price to pay, and any symptoms
always passed after some sleep. It reminded me that I had MS, but it also
reminded me what I was still capable of doing, and with so few side-effects.

It was quite a surprise at my third checkup to see that my neuro had
changed sex. It turned out he was on holiday, and his stand-in was a new
member of their team, a superb neurological registrar. She took copious
quantities of blood, and explained to me that at the next checkup the possibility
of a second dose would be discussed. She also suggested that with any luck
the NHS experience might be avoided next time around. Conclusion

The treatment wasn't as terrible as I had expected, and it was mercifully
short. I had my fair share of immediate side-effects, but think I was lucky
not to suffer more. The NHS experience wasn't pleasant, but this was mitigated
by the superb nursing care I received.

Overall I would say so far so good. I feel as if I've been given a second
chance. I'm very happy with the effects that Campath has had on my MS.
I'm a little bored with my gluten intolerance, but this is a minor inconvenience
when compared to MS. I'm hoping that will resolve itself before too long.